Controlled choice, not choice and control: Families' reflections after one year using the National Disability Insurance Scheme

Abstract

Introduction: At least 40 percent of children with cerebral palsy and their families rely on access to allied health services, assistive technology, and require funding and expertise to achieve skills and participate in daily life. Implementation of the National Disability Insurance Scheme (NDIS) has resulted in a shift to public funding and emphasis on choice and control of services, support and assistive technology to promote social and economic participation. Families of children with cerebral palsy are invested in scheme success and their subjective experiences require consideration if the NDIS is to meet participation targets. Objective: The aim of this research was to explore the experiences of families with a child with cerebral palsy, who have been in receipt of the NDIS for 12 months, comparisons to previous funding systems, and recommendations for the NDIS going forward. Methods: Purposive sampling was utilised within one specialised paediatric setting.All families received occupational therapy intervention for their child. A qualitative approach using semi structured interviews was employed. Braun and Clarke's six phases of thematic analysis was utilised to analyse the data and explore participants lived experiences. Findings: Eight (n = 8) mothers of children with cerebral palsy were interviewed.Three overarching themes were derived from the data: Equipment impacts on all areas of life; Frustration navigating the National Disability Insurance Scheme; and Gratitude, hope and suggestions. Conclusion: Families reported challenges navigating the NDIS including administrative challenges and extensive wait times for assistive technology, as well as gratefulness for increased opportunities for support. Occupational therapists and other allied health professionals can assist by: being proactive in service delivery and advocating for the needs of individual families and children; and finding ways to increase the preparedness of the NDIS to better understand the needs of children with cerebral palsy and their families.

‘I feel like my house was taken away from me’ : Parents' experiences of having home adaptations for their medically complex, technology‐dependent child

“…A new finding of this study is the identification of the differences in experiences and outcomes of home adaptations between parents who received fully funded government grants and whose workforce were appointed by their local council and those who funded them (fully or partially) and appointed contractors themselves. Although Smethurst et al ( 2021 : 205) study conducted in Australia found that ‘equipment impacts on all areas of life’, this study is the first to demonstrate the impact of home adaptations on all five aspects of at‐homeness (appropriation, at‐easeness, regeneration, rootedness and warmth) (Seamon, 1979a , 1979b ).…”

“…They felt powerless when those involved in the adaptation processes perhaps saw their child ‘as a burden or a cost’ (Gallo et al, 2021 : 1) or as ‘undeserving’ (Cross, 2008 ). Like families in other studies, parents said that they had to fight for (Boss et al, 2020 ; Currie & Szabo, 2019 ; Parsons & Darlington, 2021 ), prove they are deserving of and wait for the resources (Dybwik et al, 2011 ) and adaptations (Boniface & Morgan, 2017 ; Smethurst et al, 2021 ) they needed to care for their child at home. Without the correct technology and adaptations, the family were limited in their family and social activities; these findings are echoed in Smethurst et al's ( 2021 ) study.…”

“…Unlike families who received fully funded government grant adaptations who felt like their home had been taken away from them, families who fully or partially self‐funded their adaptations had positive experiences and attributed these to being involved in decision‐making processes, having an ongoing relationship with and receiving individual attention from a very small team of experienced occupational therapists, physiotherapists, architects and builders. Smethurst et al ( 2021 ) also found that parents valued the involvement of allied health practitioners who had knowledge of the current and future needs of their child in the delivery of services, support and assistive technology. Resonating with Parsons and Darlington ( 2021 : 4) suggestion of the importance ‘for all healthcare professionals to respect … [parents’] expertise at every encounter’, the strong, ongoing relationships and good communication between parents who fully or partially self‐funded their adaptations and those involved in their home adaptations resulted in well thought out, cost‐effective adaptations that met their child and family's long‐term health, well‐being, accessibility, privacy and dignity needs.…”

“…King et al ( 2017 ) and Smethurst et al ( 2021 ) discuss the importance of family‐centred practice for the child and their family unit. Family‐informed adaptations enabled families who fully or partially self‐funded their home adaptations to function and feel comfortable and safe within their home, resulting in a home that felt like home for all family members.…”

“…had positive experiences and attributed these to being involved in decision-making processes, having an ongoing relationship with and receiving individual attention from a very small team of experienced occupational therapists, physiotherapists, architects and builders Smethurst et al (2021). also found that parents valued the involvement of allied health practitioners who had knowledge of the current and future needs of their child in the delivery of services, support and assistive technology.…”